#35253 06-04-2007 03:31 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hello Everyone! Had to break away for a few days and ingest everything and also let part of it go. We went to the MO last week, I shared that with you all...thanks to everyone who replied, your advice is always so helpful and I can't think of how to say thankyou for someone always being here when I need a friend! We have decided to go with the RO and have the brachytherapy. It's amazing how much relief fell upon us as a whole. I know I was upset about how the MO spoke but, maybe, that is just his way of telling someone what he thinks could happen. I still don't appreciate how he did it, and the fury still sparks but I am finally a little more accepting of it all. I haven't really gotten on to see what this is all about, the RO described and explained everything, of course I'm sure that there is a whole lot more to be explained. I'm nervous, and I am more calm at the same time. The trouble I am having is that every so often I fall apart...I break down in tears, I get extremely angry and at times my heart feels like it is going to fly out of my chest. Yesterday the fact that my grandmother brought over her young dog sent me into such a snit. The dog got loose, a neighbor popped her head in the door to tell us nana's car windows were open and it was pouring rain, the dog ran out and right up to another dog that is known to hate other dogs. My mom came running out the door, very upset, getting pale and yelling for the dog. This mad me madder than a hornets nest! I told mom later that I was going to tell nana to keep her dog home. She told me I can't, it would hurt her feelings. I am so frustrated, I don't want the dog here, she is a nice little papillon, not trained well, runs and pees all over the hardwood floors...and who knows about the areas where there is carpeting. I have an old male bischon who feels a need to mark his territory...double cleanup! I want nana to feel comfortable visiting. I don't want to hurt her feelings...I don't want her dog here at this time. I'm also beside myself because everything is falling on me. I am trying to stay on top of all the housework, shopping, and mom...not to mention, i have the two girls. I said I wanted to make everything as easy as possible, all agree. I am left still to do most things...that is bull....I am left to do it all. I have gotten on my kids to pull their share but when the grandparents leave dirty dishes out and food...well, it doesn't leave a good example. I must sound awful. I am already tired and angry...I miss working, I miss my life is it's only been since April...If everyone doesn't start doing the little I ask I am going to really fall apart. I am just soooo angry. And selfish...and disappointed in myself.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#35254 06-04-2007 04:44 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Donna, you need to talk to the Doctor and get some help for YOU to cope with things.
The dogs aren't an issue; neither is Nana. You are stressed almost to the breaking point, and if you don't look after you, you'll be completely ineffective.
there are many highly effective medications to help you with the stress, and there is no reason for you to feel the way you do. Talk to your Doctor, and talk to a councillor. You need to GET some help before you can GIVE effective help Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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#35255 06-04-2007 04:49 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Hello Donnarose
Welcome to the harrowing world of the caregiver.
I'm so glad your RO gave you some "positives".
Take two quaaludes and write back in the morning. All will pass and it will get better.
Try to stay stong! This is what this forum is for. Rant away, it does help. We all feel for You and your Mom.
God Bless, Petey
PS. Wayne is correct!
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#35256 06-04-2007 05:15 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Thanks Guys! I have an appt for tomorrow with my doctor. You're right...it's not my grandmother...but her dog ahs always driven me nuts!! I hope that whatever they give me will keep me normal, just calmer.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#35257 06-04-2007 09:11 AM | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | Donna - along with going to your Dr and getting some help there, perhaps you should share with some of your family the fact that you are stressed and feeling very worried about your mother, and there are some things they can do to help you and alleviate some of this - like your Nana leaving the dog at home when she visits, and your children pitching in a little more. You may have already said something, but I know from experience that I often silently seethe about things, but if I diplomatically talk to the person about it, it often helps...
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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#35258 06-04-2007 11:54 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hey Donna, I'm not big on medicating right off the bat so I'm going to take the opposite side on this one! I don't know that you need medications...........I think what you need is to go off on your family, and by that I mean to speak your mind and tell them how YOU feel. Take charge, take control and everything will fall into place. If someones feelings get hurt, tough, they'll get over it. Your mother and yourself need to be the focus right now, not anyone else's feelings. My husband did an awesome job with that part of it, he ran defense and interference for me so many times during treatment! He didn't care who he pissed off. Like he said, I've got one chance to help you get through this.............I have a lifetime to apologize to someone.
Trust me when I tell you that others CANNOT understand your life right now, they don't SEE or FEEL the changes to it. Not understanding makes them not see things, such as how annoying and uneccessary another dog in the house is.
Praying for you, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#35259 06-04-2007 10:48 PM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Well said Minnie. Two heads are always better than one!
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#35260 06-05-2007 01:10 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Thank you Ginny, Minnie and Petey. I am going to stop by and visit my Nana today, I am going to explain that her dog coming adds to the level of stress and I won't be able to relax and even ask how she (Nana) is dealing with all this. Mom is on my side now, I nearly broke telling her upset it made me the other day. I sat down with my dad and girls last night and explained that as of right then there were new rules and expectations. As for the meds....I am going to the doctor today. I don't really want to take anything, but would like something on hand. When my brother died a few years back I tried something and I waslked around like a zombie and looked like a nervous german shepard yawning....have you ever seen one do that?? That's what I felt like! As for mom....she had a great day yesterday! She planted and cleaned her garden area, she went shopping ofr plants with dad, she was able to be up all day....the med her RO gave her has been wonderful! The only upset she had was early this moring she woke up thinking abuot what my sister had asked her about going out shopping for wigs. I never thought about her losing her hair with radiation. Have you heard of anyone having this happen? I know with chemo it can. Trying to be upbeat, I know that helps. As I tell my kids and my sister often....even if you aren't having a good time, pretend that you are, eventually you may believe it. I know ... goofy, sounds like BS, but I think it ca also turn a mood around if you try hard enough. Going to follow my own advice today. Hope everyone has a wonderful, peaceful and easy day!
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#35261 06-05-2007 03:24 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Donna --
The people who lose hair with radiation only lose it where the (external) radiation beam impinges on their scalp, and then it doesn't usually show too much (tends to be at the nape and lower hairline) if you cut hair long over this area. That's what my husband did, no one noticed his bare-naped look. With guys it also affects the beard. Sometimes the hair and beard grow back a different texture and color, which can be interesting!
However with brachytherapy I am not sure that there will be any hair loss due to the radiation, as it is very short-term.
Unless your mom is getting one of the chemo drugs that causes hair loss such as Taxol she is unlikely to have any hair loss. Cis- and carboplatin do not cause massive hair loss, although in some folks there is a thinning of hair. (Which could also be due to the radiation field, so hard to pin down).
In other words, no - she does not have to shop for a wig...
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#35262 06-05-2007 03:28 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Donna, it sounds to me like you are going to do just fine with all of this.....I love your sense of humor! A yawning German Shepard, lol.
I'm so happy your mom had a good day yesterday, that will do wonders for her. She is the same age as my mom, if I remember correctly......she's 63?? My mom is so busy and active, works fulltime with a job that travels, she just got home from a six week stint in Palm Beach. If I were in your shoes, I would be doing just as you are doing now. Pat yourself on the back and KNOW that you have the strength to do all this and that you will be a better and deeper person because of it. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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